Award-Winning Author of Twirling Naked in the Streets and No One Noticed; Growing Up with Undiagnosed Autism shares her book, life, and insight into the mind of children and adults on the autism spectrum.

DSM-V – New Diagnostic Criteria for ASD – What will this mean for me, an Aspie?

Asperger’s Syndrome, PDD-NOS, and Autistic Disorder will be removed from the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which will be published and in effect in May of 2013. Those disorders will now be included under one umbrella diagnosis of Autism Spectrum Disorder (ASD).

To be honest I am torn about the new DSM-V. On one hand I have finally found out what has been “wrong” with me my entire life. Being diagnosed with Asperger’s Syndrome came as quite a shock to me and many others, but in reality when the shock wore off, it was a tremendous relief.

I finally had a name for my difficulties. This will not change under the new DSM-V because I am clearly within the new diagnostic guidelines for Autism Spectrum Disorder. In fact, I actually fit those criteria more accurately than the previous.

The part that concerns me most is the removing of the name, Asperger’s Syndrome. I understand that we as people are not a name, but it almost feels like invalidation. For 38 years I did not exist, no one saw my autism/Asperger’s, and now on some level I feel like it has happened again. I finally had a group of people to which I belonged, to identify with (Aspies), and then someone comes along and decides…well that doesn’t exist any longer.

Are we also invalidating all of Hans Asperger’s work with these autistic individuals? What about all the scientific research that has included Aspies as a group, will it still be valid? I think there are many questions rolling around in my mind that no-one can answer just yet.

On the other hand, I have noticed that with the label Asperger’s, opposed to Autism, sometimes our difficulties are minimized. After all, Asperger’s is a mild form of high-function autism, isn’t it?

In my short time online writing and blogging, I have had more than one comment to that “Asperger’s does not equal autism, it just doesn’t.” Yes—we all have differing degrees of difficulties, and there is no doubt that I function differently than a person profoundly affect by autism. But, that does not mean my difficulties are not real.

One thing the new diagnostic criteria will do is label all of us autistic. No more minimizing of those with Asperger’s or PPD-NOS, we will all be recognized for the difficulties that we do indeed have. This alone may be a good thing.

I visited with one psychiatrist, who insisted that she’d worked with Aspergerian children and has never seen an adult with Asperger’s. Then categorically denied that my diagnosis could be correct based on those terms without talking to me, looking at my records, or discussing my history.

Yet another doctor (a neurologist) questioned the validity of such a syndrome even existing, and this was not long ago. He went as far as to say that if they say it’s that (Asperger’s), “that means it’s all in your head.” What? Autism is not real? My Sensory Processing Disorder is in my head? Really? These are some of the things that MAY be corrected with the new umbrella diagnosis. Now, let’s look at what that criterion is:

“This is the proposed definition of ASD. For a person to be diagnosed, they must meet criteria A, B, C, and D.

A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated-verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people

B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:

1. Stereotyped or repetitive speech, motor movements, or use of objects (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases);

2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes);

3. Highly restricted, fixated interests that are abnormal in intensity or focus (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests);

C. Symptoms must be present in early childhood(but may not become fully manifest until social demands exceed limited capacities)

D. Symptoms together limit and impair everyday functioning.”

My Thoughts

I have highlighted above some the most important things about this criterion, and what I consider to be the most concerning.

To begin with, the first section, A, highlights social interactions and to receive/maintain a diagnosis of autism spectrum disorder, you must meet ALL THREE OF THE DEFICITS highlighted. It bothers me that autism is still being categorized so strongly as a mainly communication disorder because socializing is only the tip of the iceberg when we look at autism as a whole.

For the most part I believe that if you have a diagnosis anywhere on the spectrum you will likely retain that diagnosis given even the three socialization based criteria use such a broad non-specific language. It does give doctors much latitude in diagnosis. Who is to say what abnormal social approach is? What exactly is normal?

I think that we have an improvement of sorts in section B, where patients are required to exhibit two of the four symptoms listed. This is the first time that Hyper-or-hypo reactivity to sensory input has been included in autism diagnostic criteria.

I am extremely happy to see this added with the hope that the medical profession may be beginning to see this part of our difficulties. If I had to pick just one aspect of my autism that gives me the most trouble, is the most disabling, and the most concerning to me, it would be my sensory issues—no contest.

I suspect the same is true for many spectrum children. From my experience, I can tell you that many meltdowns, “temper tantrums”, and outburst and complete shutdowns where I’ve closed myself off from the world were directly connected to the amount of sensory overload I experienced.

It bothers me a bit that it has taken so long for someone to recognize sensory reactivity as part of autism. Then again, it bothers me that it is effectively labeled a mental disorder and included in this manual at all, but that is a discussion for another time.

Section C: Symptoms present in early childhood; check. Read about my childhood here.
Section D: It is subjective, but standard–impairs everyday functioning: check.
After reviewing the new criteria, I am assured that I will retain my autism diagnosis; it will just be called Autism Spectrum Disorder. I can simply say that I am autistic without explaining what Asperger’s Syndrome is because most people have at least heard of autism. I am NOT worried about losing a diagnosis.; I am only losing a label that I have come to identify with and for me that is sad. I am after all, Aspie Writer. Should I change my name?
So now that you know what the new criterion is, what are you thoughts? Do you welcome a change in diagnosis? Horrified by the invalidation of Asperger’s? What will this mean for your/our children?

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Jeannie Davide-Rivera

Jeannie is an award-winning author, the Answers.com Autism Category Expert , contributes to Autism Parenting Magazine, and the Thinking Person's Guide to Autism. She lives in New York with her husband and four sons, three of which are on the autism spectrum.

I grew up with an informal diagnosis of “touch of autism”. When I decided to explore it further, the DSM-V was already out. I’ve pretty much given up on trying to get diagnosed formally with autism now because of that first section and I’ll be going straight to SPD because I can chit chat just fine. I’m automatically out of the running. But like you, those bloody sensory issues are far more annoying than anything autism has ever thrown at me.

I hate the being able to “chit-chat” seems to negate our diagnosis is some people’s (professional’s) eyes when really it has little bearing. It is what goes on in our insides during those sessions, or how we obsess over how we must have sounded talking to people later on in the day, or our constant scripting that people DO NOT see. All the years of learning to just say, “Oh, I am fine,” to questions no one really wants an answer to doesn’t mean our difficulties do not exist, just that a stranger does not see them. So frustrating, don’t you think?

As a delivery driver and route service representative I can interact superficially for short periods of time with customers on my route making light conversation and addressing their needs, I can even kid around with people and have fun however when it comes to anything requiring a real personal connection or relationship with people I’m clueless. I’ve never had a real girlfriend or even a best friend and have no idea how to go about getting one, as such I’ve essentially given up trying. I try to just be nice to people and hope I’ll “hit it off” with someone eventually but I never do.

I think it must be more complicated than this, because I received half a dozen misdiagnoses over 20 years in which I possessed only a couple treat these diseases and treatment was highly ineffective. A couple years ago I began to susp over 20 years in which I possessed only a couple treat these diseases and treatment was highly ineffective. A couple years ago I began to research and talked to people diagnosed ASD who debunked some stereotypes, so I begin to tell people I thought I had something “not yet discovered that is related to Aspergers” even though I fit the vast majority of criteria, because I thought I could not be this in that I violated this number one most important criteria and being outgoing, loving company and human touch, and being so hypersensitive that made me melodramatic rather than robotic. Professionals should be too for that reason, until I read nerdy, shy, and inappropriate. This was my life, childhood and adult, to a T. Although Cynthia Kim was as antisocial as she was supposed to be, until I read nerdy, shy, and inappropriate. This was my life, childhood and adult, to a T. Although Cynthia Kim was as antisocial as I realized aspects I thought I had I was not conceptualizing in the right way. And certain traits of ours that seemed upset or simply different reactions And coping mechanisms to the same phenomena. I also realized I had a lot of same social fears and anxieties, I just acted them out differently. Showing excerpts of the and coping mechanisms to the same phenomena. I also realized I had a lot of same social fears and anxieties, I just acted them out differently. Showing my family excerpts from the books made family members jaws drop. Over 3 sessions my shrink went from skeptical to “100% convinced. No doubts whatsoever” I had actual Aspergers. Revealing my official diagnosis to friends surprised very few, and those with extensive exposure to the syndrome told me they had known this for a while. So I can only theorize as to how I can have this and my gregarious personality, but I do. We need to do more research for sure.

I absolutely adore Cynthia’s books–she is a fantastic writer and does a great job at showing how everyone on the spectrum “presents” differently. I too was quite “social” but was not conceptualizing like everyone around me. I am so glad that you finally got the diagnosis and validation that you needed!

My husband too exhibits some spot on classic traits of aspergers. Socially awkward but very unaware…craves attention and validity and human love but doesn’t know how to seek it out appropriately. Will literally chase someone down to finish telling his mesmerizing tale on the history of highway 212. Thinks he is hilarious but has a book case of books on how humor works. He is obsessed with fantasy football statistics and highways and trains and coins..but sings like a bird and writes beautiful poetry. I am convinced the human mind cannot be quantified or qualified. Its just to beautiful and complex!

Wonderful article Jeannie. I am 50 years old and am trying to get an assessment of Autism. I have a copy of a 1969 psychological assessment on me pointing towards Autism but it was not fully assessed. I always knew I was different and now I would like it done to confirm it.
I am blind to go with it and so many of the Autism markers have and do apply to me.
I will let you know if I can get this assessment.
I would like others comments too

Hi There,
I can understand what you exactly want to say and what is actually making you upset. Naming a disorder again and again is of no worth according to the people like us, but when you will for collecting facts behind this then you will fine that putting Aspergers in ASD category is very reasonable and genuine thing.
So, just don’t be upset with any of these news, and yes Aspergers is not at all equal to Autism.

Yeah, the requirement for 3 of A bothers me for pretty much the same reason as it does you; and yes, I’m definitely *all for* the sensory impact to be there. I agree that it’s the sensory stuff that is a huge difficulty for us.

(And really, these criteria were written by allistics. Is it any surprise that they see communication and social deficits as the main issue?)

I’m not surprised at all because it shows how much is still unknown about autism. When I say unknown I don’t mean unknown to us autistics but to others. I do see it as a primarily social and communicative “disorder” as it is mostly described. I understand how to communicate, and social in my own way…others just need to understand MY way as well as their own. 🙂

My name is Jacki Cucinotta. I am a senior at Curry College in Milton, MA, majoring in biology. I am also in the school’s Honors Program, and I am writing a thesis which examines the debate concerning whether or not Asperger syndrome should remain on the autism spectrum. This topic is extremely important to me because I have Asperger syndrome, which I was diagnosed with at the age of six.

At this point I am looking to find individuals with any autism spectrum disorder (including Asperger syndrome, aka AS) to interview for my thesis. All information will be entirely confidential, and the interviews will occur via private exchanges through e-mail. If anybody wishes to volunteer to be part of this interview process, please comment on this post or e-mail me at jcucinot2009@curry.edu. I really look forward to these interviews and discovering new insight related to AS.

I’m with Caroline about “Aspie” being a label and that it doesn’t need to change.

I’m enthusiastic about this change, because I firmly believe that the sensory difficulties are actually a cause of social difficulties–being abnormally sensitive to sensory input makes it hard for me to stay focused on the facial cues and body language of others. They may not be the only cause of the social difficulties, but they are definitely exacerbating them.

There’s no reason we can’t still have an Asperger’s community, though. (And actually, I met the criteria for classic autism except for the language delay. I had one professional insist that I didn’t have Asperger’s because I was “too autistic” and another insist that I must have Asperger’s because I am too good with words to be “fully autistic”. I’m glad that those kinds of ridiculous discussions are soon to be over forever.)

We can talk about our experiences as people who “need support” (as opposed to “substantial” or “total” or whatever the modifiers are) under the term “Asperger’s” for as long as we want. It’ll make the doctors mad, but who cares if they get mad? They might even be too busy fighting about whether we’re adults with developmental disabilities or adults with comorbid neuroses stemming from past developmental disabilities to notice.

Doctors are all bugs on the bark. They miss the trees, let alone the forest.

Hi there, I’m one of those “bugs on the bark,” a family doctor, who didn’t recognise my son’s traits for Autism Spectrum until he was 4 and 1/2 years old. He is now 5 1/2, and has only recently been officially diagnosed with Aspergers and Autism Spectrum Disorder. The specialist diagnosed him using both the DSM-IV and DSM-5 criteria, and he fits both. I was so happy for him to have a diagnosis of Aspergers, having read so many stories of Aspies who felt immense relief to know that there was an explanation for why they were different from NTs, and to know that there were others like them that they could network with. I was so happy that my son would be able to benefit from the diagnosis and from the network of Aspies as he grows up. I believe that the benefits of the more appropriate diagnostic criteria in the DSM-5 will make the diagnostic process more seamless for the person being diagnosed, and their families. However, I really hope that the “Aspie” label doesn’t fade out, because I believe that the “Aspie” culture and networks are so beneficial for those on the spectrum who are able to take advantage of the support and experiences of others. The way I see it, ASD is just a technical diagnostic term, used to help specialisists to tick their boxes, whereas I see the “Asperger” label as more of an identification with the positive aspects of the spectrum, and the positive attitude that Hans Asperger had toward those people who had Aspie traits. I use the label “Aspie” as a term of endearment that I have for my son’s positive differences and of understanding and pride I have in him for,working through the challenges that I recognize exist for him in navigating the alien world of Neurotypicals.

Thanks for your post. I am a 34yo mother and LPN, who has recently self-diagnosed with Asperger’s. I just had my mental health intake today in pursuit of formal diagnosis. I feel that I have been heretofore unable to fulfill my true calling in the study of behavioral psychology due to deficits in social and executive function. My goal is to go back to school, and I am going through the diagnostic process in the hopes of obtaining disability based financial resources to help with tuition and living expenses. I am absolutely certain of my diagnosis, but have hit roadblocks of healthcare professionals not believing me because I am usually capable of effectively communicating, and am rather intelligent and insightful. The psychologist I spoke with today described me as “successful”. I have had some successes in life, but supporting a family of four on a wage that almost makes ends meet does not fit my definition of success, and I have no means of upward mobility at this juncture. When I tried to explain the difference in presentation of symptoms between males and females, she told me there is no difference. I respectfully disagree. I am not a lazy person wanting to mooch off the system. I want to use the system for its intended purpose to fulfill my potential and give back to society. I would welcome any advice or resources to help me get past this barrier to growth.

“I am usually capable of effectively communicating, and am rather intelligent and insightful. The psychologist I spoke with today described me as “successful”. I have had some successes in life,”

This drives me insane! I understand your frustrations, and it gets me crazy that so many care providers misunderstand what ASD looks like especially in Adult Woman. I had the lucky experience of finding a therapist that took the time to read the books I was reading, and the accounts of other autistic woman and experts who explained the difference between men and woman on the spectrum.

The idea that we are not intelligent or cannot communicate effectively I think is ridiculous, or that we cannot obtain some degree of success in our lives. It actually angers me…I have been successful lately–I wrote a book that is doing well, I write for answers.com about autism, does this mean I am no longer autistic because I have some degree of success??

Does it make Temple Grandin not autistic because she is successful? It is an absolutely ridiculous notion that autism can be ruled-out on those grounds! Plus–our communication, insights are at the highest in a one-on-one therapist and me only setting. That is the IDEAL setting for us… AND our intelligence, especially our fluid intelligences is usually above average!!!

Sorry for my ranting, I just get so irritated by many of the health care providers! All this is to say, I do understand your frustrations, and maybe hopefully a little insight can give you some ammunition to fight their arguments with. My thoughts are that you know yourself better than anyone and if you feel this diagnosis fits–it probably does.

Aspiewriter,
Thank you so much for your rant. It is very frustrating. I told Cynthia Kim that I’d hate to have to induce a panic attack for my next appt, and I’m not even sure I could! Lol. It’s not a choice to panic, it’s a choice not to. Part of our responsibility to the world is to educate, as many of us are choosing to do. There’s nothing easy about it, but we’ll get through it. I’m focused on getting my diagnosis right now, but I would like to consult with you later about starting my own blog in the future, if I may. This is one market that needs to be flooded, and it’s gradually happening!

These are diagnoses, words used by people who consider the way some people think and perceive and feel are equivalent to disease. “Aspie” is not a diagnosis, it is a cultural and political label, a way to articulate some of the things that a group of people have in common. So, why let go of the political label just because people who pathologize the whole issue have changed THEIR label? Maybe it is time for people on the spectrum (including people like me, who are not necessarily diagnosable)to name ourselves?

I think, having one child diagnosed in 2009 with Aspergers and one in October this year with autism, that people have been instantly more accepting of the autism as a “proper” diagnosis. And this without any advancement on their part in understanding – somehow autism seems to be a more serious word in common parlance. As you said Aspergers is viewed as mild and not very disabling, but my son had a breakdown due to the social and sensory torture he endured for only a few short weeks at a secondary school. Nothing mild about that. Yes he is lucky that he is intelligent and verbal, but to say that he has insignificant problems would be demeaning to both him and the medical and other professionals who diagnosed and have subsequently supported him.

If ASD is more widely accepted and understood then perhaps not having Aspergers as an official label any more will matter. He will always be my lovely Aspie boy though – and I think you should continue as Aspie Writer – it’s a big part of who you are, or feel you are, and so many others identify with that.